I won the nap lottery today. Homeboy slept 2.5 hours this morning and 2 hours this afternoon. Normally that would make me panic because WHY IS HE SLEEPING SO MUCH? THERE MUST BE SOMETHING WRONG, but I’m not so concerned today because he has eaten 40lbs of food before and after each nap. He is probably going through a growth spurt. That or he is trying to catch up on sleep. We’ve been sleep training him for the last 7 nights. It’s a bit difficult with CPAP and he hasn’t been able to go the ENTIRE night with out waking up, but we’ve made huge progress.
I know people have opinions on everything you chose to do as a Mother/Parent but both Chad and I agreed that it was time to start sleep training the little bugger. We chose the cry it out method because it seems to be what Matteo needs. I am very much of the mentality that this kid needs to figure things out for himself, to an extent. While I want him to need me I also don’t want him to be needy. He is pretty good at falling asleep on his own but when he can’t the ONLY thing that works is to let him cry. He just will not fall asleep any other way. He cries and cries and cries, I pat his chest and BOOM out like a light.
He had his respirology appointment last week. It went well but part of me left feeling disappointed. I guess it was because his first appointment went so surprisingly well, better than we expected it to go, that I was kind of expecting the same thing, which was not realistic. They took an x-ray of his lungs and compared it to the x-ray they took at discharge. It looked a little better which was positive. His doctor said, no matter what, the fact that he is growing and thriving is proof that he is doing better. We have at least another two months of CPAP at which point Matteo will probably go for a sleep study to see if his lungs can handle a night without it. Until then we trudge along.
Over the last week he has exploded with activity. He went from not rolling at all to rolling both back to front and front to back. He is a tornado in his crib, never falling asleep in the same place I put him. He is sitting on his own so well these days, though he can’t quite be left unattended just yet. He is a hungry hippo eating up a storm. Just don’t offer him pureed chicken because he will have a fit. I can’t believe how much hes changed in such a short period of time.
I don’t know how to get back into this blogging business. I guess I just have to do it, right?
So much has happened since Matteo came home from the hospital, it’s just too hard to go back and recap. It’s been a learning curve for Chad and I, obviously. I think it’s a learning curve for anyone who brings home a baby, but even more so for us, given all the complications we’ve had to face. I try not to stop and think about it too much because it stresses me out. The fact that for 137 days I had to leave my child in the care of other people, that I was unable to bring him home just hurts thinking about it. Panic attack hurt. I just can’t dwell on it.
Having him home on CPAP has been a challenge; an added stress on top of normal baby stress. On the one hand we are so thankful that this machine allows us to have him home, but on the other hand it is the biggest pain in the butt when its 2am and I have to sit and wait for him to fall asleep enough that putting the mask on him will not wake him up into a fit of rage. The only bonus to having CPAP at home is that we qualify for nursing hours, which means a nurse comes to our house to give us a break and take care of Matteo. Its the only reason I haven’t totally lost my mind due to lack of sleep!
Sometimes Matteo is so cute I want to explode and other times he is so frustrating I want to explode. Last week Matteo was sick with a sore throat and cough which was rather stressful for us given his whole lung issue. Thankfully his cold didn’t seem to affect his breathing but it did turn him into a cranky fussy fidget monster. It made Chad and I laugh when we ran into some friends and they exclaimed at how Matteo is such a happy baby (because he gets super happy and smiley when meeting people). On his good days he is so much fun, but on his bad days he is so fussy it is maddening!
Next week we have an appointment with Respirology where we will find out what the next step is for Matteo. It would be amazing if he has progressed enough to no longer need CPAP but it also scares me because no CPAP means no safety net. I guess it’s out of our hands either way, I just think hes gotten to the point where CPAP is more disruptive then it is helpful.
In non Matteo news we have spent the first part of Summer fixing up our front yard after last years drain tile debacle. I originally didn’t want to work on the front because I have major plans for the back, but Chad suggested starting small and as we all know, Chad is always right. I am super happy with the way it turned out. I will have to post pictures of it very soon. My life basically consists of pictures of Matteo and pictures of flowers. True story.
From the moment we found out Matteo was going to be born early, we knew he was going to be spending some time in the hospital. Just how much time was impossible to tell. If everything was OK with him health wise, he would need to spend time growing and learning how to feed before heading home. If he had any issues they of course would need to be solved first.
The last thing to develop in a baby is their lungs. Because of this I was given 5 steroid shots while in the hospital to help Matteo’s lungs develop quicker. It was basically implied that if you get these shots, your baby is pretty much good to go, so I never worried about it, especially since I was given 5 shots and mothers normally only get 2.
Once he was born, Matteo was on CPAP for 3 hours to help open up his airways. After that, he was on no breathing support and was doing great.
A few days later, while visiting him in the NICU at Surrey Memorial, his nurse informed me that through a series of events they had discovered Matteo had an infection in his lungs. This news scared the living daylights out of us. The doctor, however, reassured us that it was common for babies to contract infections if their mothers had ruptured their membranes early and that they were already treating him with a course of antibiotics to resolve the issue. At that point Matteo did not need any breathing support.
As the days went on Matteo’s oxygen saturation levels began to drop and he was placed on oxygen to help him out. Everything else with Matteo was progressing well and we were told he would eventually grow out of his need for oxygen.
Since Surrey Memorial was not our local hospital and since Matteo no longer needed the specialized care that Surrey Memorial provides, after 17 days there he was transferred to Burnaby General to continue growing. Royal Columbian was still closed because of the RSV outbreak so Burnaby was our closest option.
Our time in Burnaby was an interesting one. We were obviously new to the whole NICU experience but I could instantly tell there was a huge difference between Surrey and Burnaby. Had Matteo really just needed to grow, Burnaby General would have served us well, but since it was only a level 1 NICU (Surrey and Women’s are level 3 NICUs) they were not prepared for the inevitable needs Matteo had.
We spent Christmas and New Years in Burnaby with no signs of Matteo coming home. He was progressing beautiful with his feeding, able to switch easily from breast to bottle, but he was just not able to ween himself off of oxygen. Every day I would ask his doctor what the plan was and every day he would shrug his shoulders and say “he just needs time”.
Side note to this whole story, I am not good when it comes to confrontations. I avoid them at all costs. I also just blindly trust all doctors, because well, they are doctors and they know best, so I rarely question anything they have to say. Its this whole, “You’re an adult and I’m 12 years old” complex that I have. Therefore, when Dr. “Burnaby” said “Boh, I have no idea whats going on with your kid” I just sat there and said “OK”.
It wasn’t until Dr. “Burnaby” was away and his replacement saw Matteo that he started to question why he was still in the hospital and still on oxygen. It was this doctor who actually forwarded Matteo’s information to BC Women’s & Children’s Hospital and had him transferred there for more investigations.
Part of me was really worried that if we were being sent to the NICU at Womens then it must mean that something was seriously wrong with Matteo. But the other part of me knew what an amazing facility Women’s & Children’s was so I half expected them to cure Matteo of his oxyegn needs with in no time.
Our time at BC Women’s was a long and arduous journey, not at all what I was expecting. For the first time people were starting to talk about Matteo’s “Work of breathing” and not his “Oxygen needs”. This was the first time we had heard anyone spell out this concern. The night we went to visit him and found him on CPAP and no one could tell us what had happened or why he was on it was one of the worst nights of our life. We thought he was going backwards, that he was somehow getting worse, when the reality was the support he had been receiving up until that point was not the support he actually needed.
Matteo spent 3 months in the NICU at BC Women’s Hospital. While there doctors did their best to investigate what exactly was going on with Matteo’s lungs but were not able to actually diagnose him. They tried every non-invasive test they could. They altered his feeds, they switched his breathing support and they even did genetic testing. Nothing they did gave them a definite answer as to what was going on with his lungs. In the end they determined that he had some type of Interstital Lung Disease but the only way to find out the exact type would be to preform surgery and remove a piece of his lung and send it for tests. Thankfully they didn’t feel this options was worth it because whatever answers it would have provided it would not have altered the way they planned to treat him.
In the end the doctors agreed that Matteo was in fact going to grow out of whatever it was that was going on with his lungs. He was eating and growing and healthy in every other way. If the cause of his “work of breathing” had been something serious and life threatening, then they would have seen his health rapidly decline. The good news was the opposite was happening. He was able to gain weight and develop wonderfully despite this set back with his breathing. A plan was then put in place to find out what type of support he needed to be able to go home.
After 137 days in the hospital Matteo finally came home without any oxygen or other types of continuous breathing support. All that he needed was CPAP support while asleep (nights & naps) to help open his airways and allow him to breath easier while awake and playing. Since being home we have already had one follow up appointment with Respirology at Children’s Hospital and they were so impress with his progress they down graded his support to just at night.
While we are thrilled beyond words that Matteo is home and thriving, there is still a ways to go before his breathing is 100%. We are comforted, however, in the knowledge that while this may take a long time, he will in fact grow out of it.
How does one even begin to get back into blogging after a life altering absence of baby like proportions?
Some of you who know me personally know what has happened over the course of the past 5 months. For those who don’t, here is part one of the saga.
When I last left you I was holed up in a room at Royal Columbian Hospital, 32 weeks pregnant, covered in the worst rash of my life, waiting for baby Ziti to make an appearance. Soon after that post was made I started having contractions. Almost every night for a week I had contractions; intense, back breaking contractions. Every time they came I would be whisked down to labour and delivery and hooked up to the Non Stress Test machine. They almost always came at night but would be gone by the morning. My labour never progressed passed these contractions which was extremely annoying.
Exactly one week later, at 33 weeks pregnant I began having contractions again at 2am. Down to labour and delivery I go as per the routine. These ones were bad. Really bad. I didn’t want to call Chad or my parents as I figured it was yet another false alarm, so I just lay there in extreme pain. While I waited to see if anything was going to happen I was informed by one of the nurses that the NICU at RCH had an outbreak of RSV and was under quarantine. This meant that all mothers who were “threatening” to deliver premature babies had to be transferred to another hospital.
Are you kidding me.
Calls were made, ambulances came and off to Surrey Memorial Hospital I went. In the middle of the night. In labour. No chance to get my things. No chance to pack up. Just whisked away.
I got to Surrey, was assigned a Doctor, was monitored for hours and once again, didn’t progress passed contractions. They did tests and ultrasounds and everything looked fine. They chalked it up to my uterus being irritable and nothing more. There was no plans to induce me before the 34 week deadline so I was just going to have to deal with it.
By the time Saturday night came and I had been having contractions basically every night for a week, I began to break down. I was exhausted. I had not slept in what felt like forever and I was tired of all the pointless pain. I just wanted it to be all over. Well, I got what I wished for.
Contractions started again at 10pm that night. I waited until 11pm before I informed the nurses. Once again the contractions were really bad. At about 1am they decided to see if I was dilated at all. Low and behold I finally was! I was kind of shocked, to be honest. I had resigned myself to the idea that I was just going to suffer forever.
I called Chad, who was, of course, at a pub. It took him forever to get to the hospital thanks to the weather and me being in Surrey.
Labour progressed as labour does. I had no sort of “Birth Plan” laid out. I was just going to leave it up to fate. As it was, even if I had had a birth plan, it would have all gone to hell, given the fact that I was at my 3rd hospital and some Doctor I had known for all of 20 minutes was going to deliver my baby.
Some time around 4am I was 5cm dilated and bleeding a lot. The doctor was concerned and baby’s head had not dropped down at all. She gave me two choices; to continue the way we were going to see if I could deliver naturally but would mostly likely end up with an emergency c-section, or take this as a sign that it was not meant to be and do a “not so emergency” c-section now. I opted for the expedited route.
The c-section was not fun. Chad sat by my head holding my hand and patting my head. I couldn’t see or feel anything, other than pressure. Despite that, however, I knew the exact moment Matteo Tarcisio Ciavarro was born. I felt them pull him out and I heard him cry. It was a moment I will never forget. December 1st 2013 at 5:06am the heir to the Ciavarro empire was born.
Seconds after being born he was whisked away to be cleaned off and examined. Chad was instructed to go with him. I was left on the operating room table without my security blanket and began to freak out. My teeth would not stop chattering. I was super agitated and shaking like mad. The anesthesiologist kept asking me if I was OK but I couldn’t stop moving. I felt like a drug addict coming down from a high. It was horrible.
Eventually they wheeled me to recovery and shortly after Chad joined me and showed me the first pictures of Matteo. Before they rolled me back to my room they took me to the NICU where I got to see him for the first time. It was weird experience. It wasn’t warm and fuzzy like I imagined it to be. It was surreal. This tiny red baby locked away in an incubator. It felt so disconnected.
I was in the hospital for 3 days before being discharged. Recovering from a c-section was the most painful experience of my life and I always thought I had a really high tolerance for pain. Those first few days at home were really hard. I cried a lot. I was home after a month of living in a hospital, but my brand new baby was stuck there. I hated it. I hated being so far away from him. Little did I know the journey we were about to embark on.
Its funny that as I sat down to write a super bitchy post about how my life sucks I received two unexpected visits from two unexpected visitors that totally brightened my day. Damn you friends and family for being so damn sweet and not allowing me to sit here and wallow in self pity and anger!
But seriously, things have been less than steller this week.
Baby is fine, I am fine (I guess technically) but I’m kind of going crazy.
Sunday night my night nurse noticed a small rash forming on my belly. I had not noticed it before as it was quite small and did not itch or anything. I woke up the next morning to notice a similar sort of rash on my face. Ummm, this is not good. I pointed it out to my nurse who informed me that my doctor would be in shortly to take a look.
Doc said it looked like an allergic reaction so she prescribed me some benadryl. I took it but it didn’t really do anything. At the same time, I wasn’t really having any irritated symptoms so I’m not really sure what it was supposed to do. I took another pill in the middle of the night which made me totally loopy and I could not sleep. Bad idea.
The rash on my belly got progressively worse and the benadryl didn’t seem to be doing anything. Another nurse came to look at me and said that the rash looked more like a pregnancy related rash call PUPPPs. Either way, this rash was getting bigger, angrier and more itchy.
The Doc came in again to see me and said no it was definitely an allergic reaction and suggested I get a new set of PJs, sheets and blankets. Nothing about my diet or surroundings had changed in the past two weeks so I wasn’t sure what I could possibly be allergic to, but I did as I was told.
Anyways, things got progressively worse. Everyone who came to take a look said it was either PUPPPs or an allergic reaction. Either way I didn’t care, I just wanted it to go AWAY!
Finally I was prescribed some Hydro-cortisone cream that I could apply on my body but not on my face. The rash, by this point, had spread from my knees all the way up to my neck and down my arms. To say it was annoying would be an understatement.
I’m on day two of cream application and it does offer me relief, but it leaves my skin super sensitive so if anything even gently brushes against my skin, even through my clothes, I am sent into a fit of tickles and itches. So weird.
As for my face, it looks better than it did, but it feels like its super sun burnt; raw and itchy. Thankfully the Aloe Vera fairies came by last night and dropped me off an assortment of lotions to sooth my skin. It feels so much better already.
Other than that, things have been pretty uneventful, other than all the wonderful people who have dropped by to say Hello. I am starting to go a bit stir crazy and am finally sick of the hospital food. Only took me 2 1/2 weeks. That and the heat has started to come on at night and instead of it making a constant noise it comes on in waves making it sound like a super dramatic wind storm is taking place outside. Its unbelievably loud and means I have not slept at all in two days. Frick.
But anyways. I am 32 weeks today, so 2 weeks to go. Selfishly I just want to have this kid already so I can get the hell out of here, but I know the longer I hold on the better it will be.
Lets hope I don’t totally lose my mind by then…